New guideline about testing for Vitamin D from ... - Thyroid UK

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New guideline about testing for Vitamin D from Boston, USA

humanbean profile image
30 Replies

I thought this might be of interest to someone :

Title : 'Don't Screen' for Vitamin D: New Endo Society Guideline

Link : medscape.com/viewarticle/do...

Date Published : 03/06/2024

The article is short but it has 133 comments, some of which are worth reading.

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humanbean
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30 Replies
HowNowWhatNow profile image
HowNowWhatNow

interesting ref to thyroid binding globulin. What’s that about?

humanbean profile image
humanbean in reply to HowNowWhatNow

Can't help you with that, sorry.

FallingInReverse profile image
FallingInReverse in reply to HowNowWhatNow

The analogy is about how when we measure “total” things - like Total T4 and total D (which is apparently the way we test D now) - it doesn’t account for the part of that thing that is not available/free, rather it’s attached to binding things (like globulins or whatever the equivalent is for D). Understanding thyroid binding globulins are what led to the preference for testing Free T4. They are saying at some point it might be helpful to test Free D in the same way.

HowNowWhatNow profile image
HowNowWhatNow in reply to FallingInReverse

Thank you.

Does the NHS only measure Free T4? I thought my total T4 had been measured before, but could be mistaken.

This advice seems very site specific.

When my sister worked in an NHS hospital where she a lot of Asian patients, and especially south Asian patients, well over 15 years ago, she said that she and colleagues assumed that patients being admitted were Vit D deficient, such was the high number who were seriously deficient, when tested, over many years.

Vit D deficiency is being implicated in an ever increasing number of illnesses, complaints and symptoms… why would doctors want not to have it as part of their game plan, apart from as part of a cost cutting exercise?

Comment section for the win, and another notch for healthy suspicion of Medscape and wherever they sourced this info.

Krisinua profile image
Krisinua

Can't even read it why don't you just post what it says here

humanbean profile image
humanbean in reply to Krisinua

I've only linked to the article rather than copying it so that I can't be accused of breaking copyright.

FallingInReverse profile image
FallingInReverse in reply to humanbean

Krisinua I didn’t have a login, no sign in required even though that pop up makes it look like you need to. You just need to scroll down to read the whole thing, comments are viewable too.

tattybogle profile image
tattybogle in reply to FallingInReverse

sometimes i find that works for me on other sites eg GPnotebook, but i can't get round / past this medscape pop up either .

Whether you can scroll past this pop up or close it must depend on 'something i don't understand'.

humanbean profile image
humanbean in reply to tattybogle

On Medscape I can't get rid of the popup asking me whether or not I will accept cookies. It makes no difference whether I accept cookies or not - it just keeps asking me over and over again. It's very annoying.

FallingInReverse profile image
FallingInReverse in reply to tattybogle

Hmmmm! I’m iPhone only when I’m on the forum, so wonder if it’s device specific. 🤔

tattybogle profile image
tattybogle in reply to FallingInReverse

I have dumb phone.

I'm on an iron age laptop , with broken keys for R and W , so needs a wireless keyboard sat next to it ..... 'running' (at a push) on windows 8 ... with gazillions of outdated everything ... and 0% battery life .

and now the screen is jumping around like a 1970's telly that needs a thump.

i'm astonished it manages to get me into anything.

it's deffo time to get a new device and the clock is running out as i write this .... however the thought of going laptop (or whatever) shopping makes me want to hide under the stairs and cry cos i don't understand anything about anything in computer land and even if you ask someone to explain it in terms a luddite can understand ,, they immediately start talking gobbledegook.

..... this must be what it's like for people coming here who don't know anything at all about thyroids.

TorcHouse profile image
TorcHouse

The Medscape article is horrendous in its implications, but the Comments from Medics are fantastic and many are hilarious. Thanks for posting this.

serenfach profile image
serenfach

Basically it says dont test Vit D because if it is out or range, we (doctors) have to decide what to do about it, and we dont want to do that. Or that is what I got from it.

Take this further, why test for anything, so then we dont have to fix it. Sort of like T3?

The labs refused two Vit D tests despite my phosphate being way low, and low Vit D can cause that. I am booked for another one next week and the GP is going to chase the labs. Not holding my breath!

tattybogle profile image
tattybogle in reply to serenfach

"Take this further, why test for anything, so then we dont have to fix it..... Sort of like T3?"

See my recent post in a similar vein:

Endo's at American Thyroid Association (ATA) have magically solved the conundrum of 'over range fT4 , with normal /or unsuppressed TSH'

... by advocating that you stop testing fT4 if TSH is in range .... simples : healthunlocked.com/thyroidu...... lost-in-translation...

HowNowWhatNow profile image
HowNowWhatNow in reply to tattybogle

That’s what my London hospital does / advocates

sparkly profile image
sparkly

Wow! People are seriously ill with vitamin d deficiency. I know I was one of them. Quality of life is most definitely affected by low vit d.Mine was only tested after an Endocrinologist some 20 years ago said no to thyroid issues but tested vit d..my level was 11. My sadistic gp at the time ignored Endocrinologist and deemed it normal. After fighting to get loading dose I felt like a new woman and thought that was the end of all my troubles..sadly just the start.

Batty1 profile image
Batty1

I don’t know who has an Endo that measures their Vitamin D levels …. In the 7 yrs that I have seen multiple Endo’s and they have never tested my Vitamin D.

sparkly profile image
sparkly in reply to Batty1

I must be one of the lucky ones. My endo usually tests once a year but I'm known that I have deficiency to start with. You would think it be standard testing for thyroid patients as thyroid and vit d deficiency go hand in hand for most of us

Batty1 profile image
Batty1 in reply to sparkly

Sadly there is a lot of things that should be standard for thyroid patients … I feel like thyroid disease is often pushed aside.

FearFracture profile image
FearFracture in reply to Batty1

The one thing my endocrinologist did right was to test my vitamin D. I have hypothyroidism (caused by Hashimoto’s) and osteoporosis and my vitamin D levels were near the low end of the “normal” range so too low. I now take vitamin D daily and my vitamin D labs are greatly improved. An orthopedist told me to try to get/keep my vitamin D levels near the high end of the “normal” range.

buddy99 profile image
buddy99

In my province (Manitoba/Canada) doctors are also heavily discouraged to test vitamin D levels, in fact they have to fill out a special form to give a reason why they want to test. It is an additional "burden" on the doctors and most don't bother. They prefer to take a guess. So within 6 months I had one doctor say I was probably taking too much D3 and an other saying I was probably deficient. It is beyond me why this regulation is in place, because Manitoba is the "MS capital" and there is plenty of evidence that links vitamin D deficiency to MS (and a whole lot of other health issues). But then again, I have no medical background. What do I know? 😜

Poniesrfun profile image
Poniesrfun in reply to buddy99

Even on the US Medicare (which sets the rules for payment) is reluctant to pay for vitamin D testing and you need to sign a statement agreeing to pay for the test if turned down.

buddy99 profile image
buddy99 in reply to Poniesrfun

I see a healthcare provider I have to pay for (usually "free" in Canada) and she gives me a requisition for D testing twice a year. I also have to pay for those, but at least I can get them. Crossing into the US, you can most likely get whatever you can pay for, so those in Canada who fear a "two tier" healthcare system are not aware that we have that already. Only it is split between Canada and the US.

By the way, beautiful pony pic. :)

HowNowWhatNow profile image
HowNowWhatNow in reply to buddy99

A lot!

Poniesrfun profile image
Poniesrfun

and I buy meds from Canada as Medicare wouldn’t approve one I need and I can’t afford US prices. (But my thyroid meds are covered for a small Copay.).

I haven’t looked for a while but several countries have hybrid government-private systems that actually complement each other - offhand I’ve heard Germany, Australia — others?

HowNowWhatNow profile image
HowNowWhatNow in reply to Poniesrfun

In Germany and Australia you pay in - separately to income tax - to get government health service entitlement. In Australia you pay up front for services received and then get reimbursed for them if you pay in to the central system. In Ireland, I believe it’s the same. I don’t know to what extent these are private-public hybrid systems.

AmandaK profile image
AmandaK

The comments were far more illuminating than the article. I'm getting increasingly disenchanted with Medscape - invariably there's something faintly sensationalist that is being purported, with the usual caveat at the end about 'correlation is not causation' and it's at this point you wonder why they published the article in the first place.

And it's impossible to unsubscribe - I've tried several times, but it just doesn't work. In fact it's often got worse so I can only assume they have a funding model based on the number of readers so they need to hold on to as many people as possible (hence the sensationalist content, maybe?).

Thank goodness they allow comments.

Fluffysheep profile image
Fluffysheep

I was told very recently when requesting a vitamin d test that 'the labs don't do the test any more as everyone is low.' I even put a post up about it!

She did still put the request through, and fortunately it was done, so I got a result.

Benjipuss profile image
Benjipuss

With all its faults , real or perceived , I am so grateful for the NHS! I have had a full check for everything and so far have been monitored closely for TSH, FT4 and FT3. All my data is accessible online and my GP also sends a text with any results and a comment to ensure I’m happy with whatever is suggested going forward and which I’m allowed to respond to . I’m so sorry that everyone doesn’t receive this level of care and hope that you are able to access the testing and medication you need

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